Day 79: A Little of This and That

Duplicated on our CaringBridge site for permanent record here.

February 4, 2021, written by Mama

79 days in the hospital: 63 in PICU, 16 in the Oncology ward

Today is a day of tidbits.

I don't have many endearing photos of Thomas lately because he has actively been declining permission when I ask to take photos of him. I noticed a distinct shift when he got put on stress dosing of hydrocortisone: "Don't take my picture!" When I can resume taking pictures of our cutie pie without offending his sense of autonomy, our readers will be the first to know!

Thomas began feeling much better on Wednesday night with Dad. He remained chatty and alert on Thursday, so much so that we went on a wheelchair walk through the hospital, basically just walking up and down public hallways.

I took him into a little gift shop where he wanted a snack and I was dismayed that truly I could buy him nothing for sale there except for some pretzels, and those only because he would eat just a couple of them (he's not supposed to have refined white flour). I experienced the same at the hospital cafeteria recently: There was virtually nothing I could safely buy him. I'm extremely busy here at the hospital, but am trying to spend as many hours as I can crafting new meal plans and calculating the nutritional numbers for him, then saving them to a new electronic family recipe book.

Thomas still hasn't regained his appetite, which reinforces the hypothesis that he ate too much on Tuesday. On Wednesday he ate nothing. Today he ate a few bites of Rice Krispies in milk, two pretzels, about one tablespoon diced chicken, and one Dum-Dum (lollipop). I'm pondering how much he'll ever put in his mouth while he is on 100% of his calories from J Tube formula, which opens up a whole conversation among Surgery, Nutrition, and us parents.

Thomas cooperated with PT and OT today.

He received an ultrasound of his upper arm to make sure he has proper blood flow to the forearm wound that hasn't healed.

We worked on a craft project making a cardboard and string elephant. It's too advanced for a Kindergartener and will take us days, I think.

Thomas joined me in my belated start listening to Fr. Mike's Bible in a Year. Thomas was engrossed and made comments when he recognized Bible stories.

Deep Thoughts

It is challenging, to say the least, to be in a position that requires planning with immediate-term, short-term, and long-term visions, while also letting go of all attachment to outcome. 

After so much back-and-forth about whether Thomas would qualify for Rehab, he had a bed scheduled for him on Tuesday Feb. 2 and it was estimated he would be there two to three weeks. We were so close. That means I could actually start to look at when he and I would move home! With several bumps in the road this week, we all agreed that this was not the week to confidently transfer Thomas to In-Patient Rehab. Next week would be highly likely for transfer except that now next week is fairly busy with scheduled appointments. Thomas has a skin graft surgery on Tuesday, an MIBG injection at Nuke Med on Thursday, and a whole morning of MIBG and CT scans on Friday. Given that when one transfers into Rehab, one spends the first few days having evaluations before a whole-team planning meeting, it seems like shoving a square peg into a round hole to consider Thomas transferring down even next week . . . so now he might be two whole weeks delayed even getting to Rehab.

Two whole weeks delayed or is it God's perfect timing? 

Just two nights ago, I read some old entries on CaringBridge and saw when I thought we might stay in ICU four whole days, then maybe even two weeks, then the first time our surgeon suggested it really might be two months before we were home. Yet here we are getting very close to three months already and it is beyond what my mind can accept right now that we might not be home until March. Will I look back on this entry someday and think how bizarre it was that I thought we'd even be able to return home by then?

I will keep putting one foot in front of the other and trying to use sheer willpower to accept God's will.

I will also sign off to pray for those suffering much more than us tonight, including a little person who shares our wall and is clearly a very young patient in a lot of pain and fear.